Parent Participation in Los Pipitos Nicaragua

Abstract

This study focuses on factors which contributed to the high level of parent participation in Los Pipitos, a parent organization for children with a disability in Nicaragua. The participation model of Shepard and Rose (1995) encompasses four levels of participation: basic communication, home improvement, volunteering and advocacy. This model was used in this study to structure the concept of parent participation. Interviews, observations and focus groups were conducted in eight projects of Los Pipitos between January and April 2012. Also the constitution and development plan of the organization were analyzed. Embedding in the community, participation policy and amount of professionalization strongly influenced parent participation. Embedding in the community and participation policy had a positive influence on the parent participation but the effect of the amount of professionalization was ambiguous. Professional therapists supporting parents in therapy for their children improved the participation on the levels of basic communication and home improvement. Exceptions were Ocotal and Distrito VI, here participation of parents decreased because of professionalization in the therapy. Professionalization on an advocacy level decreased the parent participation in two projects, because professionals took over the role of the parents. In other projects professionals tried to support parents on the advocacy level of the project. This support increased parent participation in these projects.